Finding the Right Connection for People with Lupus

Originally published in Hospital for Special Surgery's Health Connection: Your Good Health Newsletter, Vol. 13, No. 2, Winter 2004

Wendy Doran, LMSW Charla de Lupus/LupusLine CoordinatorHospital for Special Surgery

Karen Ng, BA LANtern Coordinator, Department of Social Work ProgramsHospital for Special Surgery

Imagine you are diagnosed with a chronic illness but cannot ask questions about the disease. Imagine you are told to take a list of different medications when you are accustomed to visiting a traditional healer for herbal tonics. Imagine that your family members call you 'lazy' and 'weak' because they do not understand that fatigue is a prevailing symptom of your illness. Dealing with lupus itself is already complicated enough without these extra obstacles.

Lupus is a serious, chronic, inflammatory disease that can affect all different organs of the body, including the skin, joints, blood, heart, lungs, and kidneys. One of the mysteries of lupus is why it affects minorities at a higher rate than Caucasians. Research shows a greater prevalence of lupus in African Americans, Hispanics, and Asians, and the condition tends to be more active and serious in these populations.

A person's cultural background and health belief system can directly impact their medical condition and access to health information. Language and cultural barriers can prevent a lupus patient from receiving optimal care. Lupus is a very complex and unpredictable disease. Symptoms vary from one person to the next. One person may have mild skin rashes while another may have severe kidney involvement. Symptoms can come and go during periods of flares and remissions. The uncertainties of the illness can cause anxiety, sadness, and fear. Relationships with friends and family members may change and cause tension, guilt, and shame. Sometimes these challenges are not recognized in the communities most affected by lupus.

To provide additional assistance, Hospital for Special Surgery created several support and education programs to help people cope with lupus. What makes these programs unique is the concept of peers helping peers. Clients receive help from trained volunteers (called peer health educators) who also have lupus and who are from a similar cultural background. This allows people to feel more comfortable talking about their feelings and concerns because they know the peer health educator probably shares some of their values, customs and beliefs. In this way, clients connect with someone who really understands what they are going through.

Charla de Lupus/Lupus Chat was created to meet the needs of the Hispanic and African American communities. It began in 1994 as a sister program to LupusLine, a peer-counseling program offering phone support for people with lupus. Charla offers a bilingual English/Spanish Charla Line, in-person assistance at hospital clinics in the New York area and participation in community health events. Charla also addresses the needs of teens with lupus and their families. Charla offers a free educational booklet written specifically for teens with lupus, and monthly Teen and Parent Chat Groups for families in the NYC area. For more information, call 212.606.1958 or 866.812.4494 toll-free outside NYC.

LANtern (Lupus Asian Network) is an outreach and education program targeting Asian Americans with lupus and their families. Our trained volunteers are fluent in Mandarin and Cantonese, and offer support and education through our LANtern Line. The program also offers educational material on lupus in Chinese. For more information, call 212.774.2508 or 866.505.2253 toll-free outside NYC.

There may be a lot we still do not know about lupus, but we do know that programs like Charla and LANtern provide ways to make living with it easier. As one client said, "It is such a relief to find someone to talk to who helps me find the strength and courage to deal with my lupus."

HSS's lupus support programs—LupusLine, Charla de Lupus, and LANtern—are all made possible through the generous contributions of Rheuminations, Inc., a private foundation that also provides major support for lupus-related research and education through the Mary Kirkland Center for lupus research. We gratefully thank Rheuminations, Inc. for its steadfast commitment to HSS and its dedication to enhancing the quality of life for people with lupus as it seeks to find a cure.